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April 2, 2009 at 12:23 pm
Sounds very similar to me. I was first diag. with GBS, treated with 5 days of IVIG and recovered to 100%. I was jogging again and doing better than ever just 4 weeks after treatment. Then one day my feet started getting numb, then the next I had the same issues as before. That was a year ago….
When I saw two specialists last year they diagnosed me with CIDP. One said I had this “all along” and it just presented itself like GBS, but since I responded so well to IVIG they had treated me correctly no matter if it was GBS or CIDP.
CIDP is “Chronic” so treatment will be on a regular basis, hopefully stretched out with help of Prednisone. My Dr. says eventually I “MAY” be able to go longer between treatments, but right now I max out at 38 days. I head to the hospital Monday for my 12th session of IVIG (some 3 days, some 4, mostly 5 days). All since my first treatment 14 months ago.
I have found that I feel worse before I feel better when receiving IVIG. By the end of the treatments I am ok, but I don’t feel at my peak until 2-3 days after last day.
When I was at my worse (no prednisone) I could not start my car (turn the key), or walk up 1 single step without colapsing. I always find that interesting that IVIG weakens me before fixing me.Best of luck, whereabouts in Michigan ?
March 25, 2009 at 1:27 pmI too went from a diagnosis of GBS to CIDP. In my case it was 7 months in that the diag. was changed.
The Neuro Muscular specialist said it was probably CIDP all along, it just “presented” itself as GBS at the beginning.
My first 5 sessions of IVIG helped me return to what we thought was 100%, then 6 weeks later it hit again. This is when we began looking for a neuro muscular specialist.
I have been on IVIG every 5 weeks for a year now, with no end in sight. Add in some Prednisone and I feel pretty normal between treatments, but as a treatment time nears I quickly digress and must get 4-5 straight days of IVIG.
I have reduced prednisone, but can’t get past 5 weeks before requiring IVIG.– Good luck, hope you can regain some strength with IVIG as I did.
November 24, 2008 at 9:04 amI have had 8 separate treatments of IVIG since Feb. 1, 2008. The first 2 times I went thru 5 straight days (.4 gm/kg) and recovered tremendously.
The next 2 sessions we went with 3 days (same dosage) and I hardly noticed any improvement (4 weeks apart). That is when we added steroids to the mix. Then another 3 day dosage, which again did virtually nothing.
A Neuro-Muscular specialist saw me and we changed back to the 5 day sessions. The last 3 have been 5 days and I have been doing quite well, even stretching out the time between sessions to 4-6 weeks. I am not sure if the 5 day sessions alone are helping or the combination with the steriods, but I sure did not benefit from 3 days at .4 gm/kg.
August 16, 2008 at 4:23 pmI visited a Neuro-muscular specialist and his team at a teaching University this past week. They concluded I have CIDP not GBS as originally thought. Since my Neuro started me on IVIG early on they felt it has helped keep the Axion intact as I have no damage to muscles (yet).
It was an interesting experience as they did a 1.5 hour long EMG test. Looking at every measurement and redoing any suspected number. They kept testing my skin temperature and warming up the test area (with a hair dryer). They have found that cool or cold extremities (arms/legs) can impact results.
They found my feet to be weaker than my hands and this explains my serious walking issues. In the end they have forwarded a treatment plan to my Neuro for implementation. I will continue on the predinsone and get IVIG every 18 days on a set schedule. They also want a bone scan, lumbar puncture and more blood tests. We are going to use this consistent IVIG dosage schedule for several months, then take a look at where I am.
A big benefit to seeing the Neuro-muscular specialist is now I am a patient. I can email/call him and so can my Neurologist. They are hopeful for an eventual recovery, but as most of us know that “definition” is pretty broad.
Nearly 9 months in and I continue to slide downhill, even after an IVIG session.August 14, 2008 at 2:16 pmI would recommend seeing an Neuro Muscular Specialist. Typically this will require a referral from your Neurologist, but not always. Also, you are only going to find this specialist at a teaching University medical facility OR a big hospital.
The Neuro-muscular specialist is a step above the Neurologist and should be able to clearly diagnose you with CIDP, GBS, Miller’s, etc… If its a Polyneuropathy then I have been told this specialist is a “must see”. Your Neurologist isn’t always going to make this call, mine did, but many won’t throw in the towel and ask for an expert that studies the Nerves and the Muscles.
I recently made this effort and his team changed my diagnosis from GBS to CIDP. They were also able to conclude no Axion damage yet. It is also this specialist that will set my course of treatment which will be administered by my local Neuro.
A side benefit is now I am also a patient with the Specialist, so my Neuro can consult with them or I can even call the specialist.August 5, 2008 at 8:56 pmI got a terrible headache about 12 hours after bag 3 of my IVIG the first two times I went thru 5 day treatments. It was horrible and lasted about 14 – 16 hours. I tried pretreatment with 50mg Beny, but that did not help.
What did help was I went to a more dilluted solution of IVIG. Instead of 10% we switched to 5%. I received the same amount of medicine, just more “saline” (or something) mixed into it. The bag of IVIG is full because of this mixture.
The last 3 treatments have gone very well, with no side effect, and I don’t need the Benydryl (which wipes me out for hours).Maybe something to bounce off your Dr. ??
August 1, 2008 at 10:04 pmWow, a complete recovery, I love the sound of that. I’m so looking forward that possiblity. I’m 9+ months into my first CIDP nightmare and it is getting worse every day.
3.5 years on Prednisone that seems exceptionally long. Did it primarily help with your energy level or did it actually help you use your muscles?I am the designated ski boat driver, so I can sure appreciate what it takes to slalom ski, but to do it competitively is awsome coming from CIDP. Super congrats on your tremendous achievement !
August 1, 2008 at 12:19 pmThat is the same dose as my Prednisone. I hope it helps, I’ve been using it for 2 weeks and also had a 3 day IVIG treatment squeezed in. It has certainly given me more energy, but it has not helped my walking. I split my dosage 30mg at breakfast & 30mg at lunch so I have food in my stomach when taking.
Let us know if your muscle strength or energy level (or both) are increased…..oh, and good luck sleeping thru the night with that stuff.July 31, 2008 at 4:19 pmAgain KIT…THANKS. You are very knowledgable in this area. I’m going to work on my patience, which I’m pretty good at anyway. Since I haven’t seen a neuromuscular specialist yet we are holding off on the Plasmapheresis until that appointment is kept. My Neuro wants a plan of action from the specialist.
I can’t say the Predinose isn’t helping…it gives me energy, I just don’t know if that is what “helping” in GBS/CIDP terms is ?
July 30, 2008 at 2:15 pmScott.
I would highly recommend you start the process of finding a Neuro-muscular Specialist to work with your Neurologist. It can take quite a while to get an appointment with a NM specialist, so start soon!
If your GBS / CIDP drags on your going to be under the gun to see one of these specialist and that can really be frustrating.
Your whole family is in for a tussle while you battle this debilitating disease. Can you recruit friends/family to help, then point them to helping your wife and kids to help relieve the pressure? I know everyone keeps telling me “if there is anything I can do”. Well I don’t have young children, but if I did I would be trying to relieve my wife’s duties by calling in all the favors I could.Best of luck, and think about getting a specialist sooner rather than later, it can take many months to get an appointment.
July 30, 2008 at 1:46 pmThanks LadyKITUSA, I like the part where you say a light switch clicks on and you felt noticeably better, I’m focusing on that wonderful time to come :-).
My Dr.’s did not feel the return to exercise after first IVIG had any negative impact on my recovery. They keep telling me if you can exercise then do it, if I can’t then, obviously don’t. They think it was just a matter of time after first IVIG that I relapsed.
Its 9 months after onset and I’m worse than ever so I’m starting to worry about long term issues. I desperately want to know I can return to jogging, golf, hiking at some point. thinking I may be restricted to a minimal effort in these areas in the upcoming years is disheartening to say the least.Steroids (predinosone) is weird. It gives me energy, kind of like a super caffeine rush, but it does NOT help my muscles and my ability to walk. As a matter of fact its now 6 days after my last IVIG (3 days) and my calves still hurt and I walk like a 100 year old (can’t lift feet, can’t move fast).
I’d love to know what steroids have done for others ?
I was told it was intended to stretch out the time between treatments. All I’m getting so far is a lot of energy to sit around (since I can’t walk any better)….and I don’t really need that!Looking at 6 more weeks before seeing specialist….I’m wondering if weekly IVIG might help ?
July 27, 2008 at 5:52 pmWell, I’m going to have to remove this thread from the Success Stories section.
I have been unable to shake GBS and have returned for my 5th IVIG session. They have also started me on Prednisone. Its not known if I have GBS or CIDP, and I’m awaiting an appointment with a Nero-Muscular specialist.
I never returned to exercise after the first time (when I thought I was 100%).
I can only go 3-4 weeks between treatments and by that time I can barely walk or use my hands.
Its been a frustrating 9 month battle with no end in sight.April 22, 2008 at 9:26 pmUnfortunatly my recovery did not last. I was cleared by my Dr’s to resume my running routine 3 weeks after finishing IVIG treatment. I was clipping along at a wonderful pace and worked my way up to 3.5 miles a day by mid March. Then I started having minor muscle pulls (so I thought). I rested, and restarted, which aggravated other leg muscles. I slowed then one day I could barely walk at a rapid pace and I knew I had relapsed. The next day I had tingling in my feet a one hand. 3 days later I was at the Dr. and he confirmed it was starting again.
A week after that and I was worse than before, I could barely walk, I could not rise from a crouch and my hands were cramping badly.
I just finished my 5 days of IVIG (2nd time in 2.5 months). I have again suffered the migrane headache after the 3rd treatement, but all-in-all I’m doing ok.
My Neurologist is not going to let me exercise very much for quite some time. She is going to monitor me with EMG tests and just keep my running routine at a minimum. Her thought is my entire nerve system was not fully recovered and I shocked it again, causing the rapid deterioration.
